heart maps

I've been thinking a lot lately about my slippery sense of place. For instance, I've walked the long block of Fifty-first street between Sixth and Seventh Avenues with Mike on our way to and from the Columbia midtown office in every season: tuning into the unfamiliar languages of scantily clad tourists from Europe and Asia in the summer, shouldering past midtown office workers in a biting winter wind, jumping over muddy spring puddles at intersections, always looking up to see the moving clouds and sun reflected and flashing on the sides of skyscrapers. It can be intoxicating or assaultive, tragic or joyful, all depending on Mike's state and whatever the latest bit of news we are digesting happens to be.

That walk is a gauntlet when I know Mike is summoning every scrap of available energy he has to keep moving, when he's short of breath and cold with an oncoming fever. I hold my breath, I will the people and traffic to cooperate. When he is sick on the streets of midtown, the landscape becomes hard and flinty, and everyone around us is The Enemy. They are so brusque, so aggressive with their quick steps. Or sometimes they are The Spoiled Rotten Healthy, walking to work with vigor and urgency, gym bags slung over shoulders and enormous iced coffees in hand, completely clueless as to the riches they are plundering, the insult they indirectly face us with, we who flinch in the wind and are often afraid of the future.

I walked those same blocks when I went to see Broadway plays on visits to New York with my family growing up. The TKTS stand was a happy wait, full of anticipation, wondering what show we'd land at. Now sometimes I walk past those throngs of tourists thinking, what is the damn point? Why squeeze together like that in a little concrete sardine can in the middle of Times Square? Did you really come to New York for this? 

Of course they did. They aren't walking Cancer Row, like me. They're walking an entirely different city.

Then there have been times, like last week, when we walked back from the office in the late afternoon sunshine feeling dazed and strange, trying to digest the surprising news that the current clinical trial is having a decidedly positive effect. My eyes sought out fellow vulnerable travelers: impatient children in strollers, old women walking at a regal glacial pace in heels, immigrant workers heading home from their shifts in delis and threading salons and cleaning crews, the Chinese vendors with placid expressions selling cut paper cards on folding tables at every corner. The October sun and shade felt equally gentle on my face.

I love you, I thought. I love all of you. Cancer hasn't ruined you after all. I love the blocks between the parking garage and the medical office. I love the little polished concrete park where men and women in office attire stare at their phones and eat their salads; I love the ubiquitous construction workers toiling amidst the scaffolding; I love the Dominican guys barking behind the deli counter when your order is ready. I love you, Times Square.

I love this city that projects vigorous strength and competition, yet whose every crack is filled with vulnerability, strangeness, unrecognizable languages, endless stories.

Back when Mike and I were baby grown ups living in New York, much was hard and unknown in my life, but being head-over-heels in love with the place I lived was always an uncomplicated pleasure. I turned up my nose at Times Square in those days, but in my heart of hearts I knew my old New York - Broadway, the Macy's parade, the tourists, Fifth Avenue, deli bagels - was still special, surviving alongside my new New York, full of things like film series and restaurants and friends and my job. I walked new maps of Brooklyn neighborhoods and downtown Manhattan into my heart. It became a different city from the New York of my childhood, the New York of my mother's acting school memories, and the New York of college visits to my boyfriend's family on the Upper East Side. Sometimes I'd walk an old familiar block, a place I had frequented during a different chapter of my life, and marvel - how could this be the very same street? The stone steps, the iron railings, the fruit stand are all the same. Yet it is transformed. The map has shifted.

It's as if God continually shakes out and lifts up a billowing, diaphonous sheet that floats above the towers and streets and spires of the city, then settles into place, just so, shifting the color and feel of every brick, every face. Time, experience, memory, expectation, the peace or lack thereof in your heart - the light shines through things at a new angle. A different translucent fabric could have settled onto the city at any moment, inviting endless responses to the world that shines through it. You might encounter the same place every day, every moment, and find it endlessly peculiar and new.

I think about this too in leafy Lancaster, in poignant, heartbreakingly beautiful late October. It's our third consecutive cancer fall here. We thought Mike's treatment would be one hard season - a grueling semester - in fall 2015. Then we'd return to our 'real' life. But his disease has defied every expectation, every assault, and our unplanned tenure here keeps unfolding before us, becoming as real a life as any we've lived.

And every fall I fall in love with the corner of town where we live. Every fall I marvel at how I can find the same streets and houses and telephone poles so damn compelling. You don't need the drama and novelty of a cosmopolis. You just need a place to which you can return, again and again. I'm pretty sure I didn't feel this way at fourteen. I hadn't accumulated enough seasons here; not yet.

For me now, in this place and season, it all has to do with the slanting yellow light, the way it makes everything and everyone more beautiful than they already are.

Autumn sunlight does something extraordinary to trees in particular, most especially in the morning and early evening - say at 8:15, when I hustle the children into the car on our way to school and a bit of stillness finds me while sitting at a light, watching the world through the windshield, or a little before 5, when I open the heavy door of the Student Wellness Center after many back-to-back sessions and walk out into the cool air and see the bright blue sky. It reveals a tree's tree-ness, it's botanical soul, by which I mean its miraculous there-ness, its solidity and fragility, its constancy and beauty and dance-like gentle stirring in the cooling air.

I'm a total broken record in October. Look at that tree, you guys! Can you believe how beautiful it is? No really, just look! I simply can't help myself. Any day now my kids will be ready to kill me. We know, Mama. The trees are nice.

But maybe you'll indulge me: today I saw an illuminated maple tree glowing red, each jewel-leaf hanging by a thread, each ready and willing to be severed forever by a strong gust of wind. I don't know what that tree looks like during the other seasons of the year, but I remember it from last fall. The tree doesn't care about me - but it shares itself graciously, completely, all the same. Talk about nobility.

And then there is the brick of Lancaster city's row homes, a similar glowing red in the sun, a brilliance against the green and yellow and orange trees lining the streets. There's the drama of scudding clouds in the sky above the soccer field on Tuesday and Thursday nights, casting shadows that move strangely on the green grass. There's the new clean, sharp chill in the night air that enlivens even as I perform the dreaded trash-and-recycling-taking-out task on Monday nights. There's the sun rising behind the dark trees on the eastern side of the street, their forms limned with pink and yellow, on the rare morning when we get it together in time to walk to school. There's the squirrels. The squirrels! And there's my beloved's face in the passenger seat, moving through light and shadow as we sail through space.

Why is it that the more I see the very same things, the more interesting and the more new they become? Why does repetition make familiar things more precious to me?

I could stay here for a thousand years, a thousand autumns, watching the sky move, light and shadow dappling these singular people in this singular place, and never grow tired of it. A thousand years! I would love the world more dearly still.

grace

One evening about a week ago Frances asked me over dishwasher loading whether I'd ever read a particular Shakespeare play. She's an aficionado, after performing in Camp Will over the summer and seeing countless plays my mom has directed. I told her I had, in a phenomenal class in college.

She asked more about it. The professor was great. I took it my senior year. Actually, I loved a lot of my classes that year; I really enjoyed being a student.

Why?

I stopped with a wet bowl in hand, hovering above the rack, and heard myself say that it was probably because I'd had some time to recover from my dad's death. I could turn my attention more fully to what was happening at school for the first time.

Up until then, he'd been sick. Or dying. Or I'd been struggling to stay upright while enduring relentless, knock-the-air-out-of-you waves of grief, and grappling with alienation from my peers, who had never caught a whiff of death and were obsessively focused on essays and romances and other developmentally appropriate preoccupations.

Standing in the kitchen, I felt my heart squeeze tightly in my chest. On an exhale something old and hard rattled loose. I don't think either of us expected me to say that.

Oh, said Frances. She hugged me and left the kitchen.

The next morning in a staff meeting at work, we were discussing a student who was admirably advocating for herself with a dean, asking for some academic leeway after her mother's death. I shared that I had lost a parent during college too, but that it had never occurred to me to formally ask for help in that way. I had been more independent maybe, but I'd also been more isolated in my struggles.

What ended up happening was that late in the spring semester of my sophomore year, a week or two after my dad died, I decided to drop a seminar. I felt overwhelmed often. A sense of unreality accompanied me through those first days and weeks back at school. I thought I'd still be able to graduate on time; it seemed the best course of action. My professor, though disappointed, supported me. Much much later, just before the very end of my senior year, I realized that without that class I didn't have sufficient credits for my major. A crisis ensued; I had to advocate hard with my advisor and department, and was eventually granted permission to complete the remaining work I had missed that semester, essentially completing the course, and thus graduate with my class. I remember spending days in Mike's tiny ill-lit Williamsburg apartment, reading and writing for hours on end, cramming weeks of classwork into a fevered few days.

I did the best work I could. Something about the whole awful thing, even in the thick of it, played into a narrative I had going just below the surface: see, you don't really deserve to graduate. You aren't really a good student; you couldn't even figure this problem out before the very last minute. Now your diploma will be a fake.

At my graduation, I was happy to have finished. But deep down I felt fraudulent.

Over the years that feeling quieted down, but it didn't go away. When I first began working in the counseling service at St. John's, I felt annoyed by how often my own 'stuff' came up. The students were so passionate. They threw themselves headlong into intellectual and campus life. I admired their commitment, but more often than was comfortable for me, I'd turn it back on myself. Why hadn't I been that kind of student? Why didn't I try harder, allow myself to sink deeper into difficult material, connect to more friends? What about studying? Why didn't I do that more? Why didn't I participate in the many campus traditions, and earn the right to show up at reunions feeling nostalgic and happy, running across the grass into the arms of my many successful friends? Why hadn't I graduated without that glaring fuck up marring the whole experience?

I remember sharing about this in supervision at the time. I surprised myself and cried. I don't think I mentioned that my dad had died during that time; only that I felt I had been mediocre and it bothered me terribly now. How could I counsel college students when I had been such a lame one myself?

When I began working at the F&M counseling service, Mike had just completed his first round of treatment. I wasn't plagued by the same feelings of shame about my past (which had subsided pretty quickly after that first flare up), but it did occasionally bubble up. I had so much else going on, it was easy to brush it aside.

But then that thing happened, with Frances. And at work the next day. A cold rock of fossilized shame broke loose inside me, allowing me to see something with clarity for the very first time. It took me twenty years.

I couldn't have thrown myself into college. It was impossible. I explained to my mom a few days ago, trying to make sense of the remarkable sea shift inside me: for the first three years, half my heart was always somewhere else. It was with you, and Dad, and Rachel. Where it needed to be.

My family was my strength. My dad was, in many ways, the center of us, and our love was big. I felt I needed to be home when I was at school, and vice versa. There wasn't space to endure the pain of his passing and dive into my school work. I couldn't be in two places at once.

I wasn't a mediocre student. Maybe I was, in fact - holy moly I think it might be true - a great college student. Despite watching my robust, brilliant, generous 44 year old dad become ill and die, and then having to learn to live in the world without him, I managed to do well in my classes and find my best friends and fall in love with my husband.

As I told my mom about this realization, it sounded a little crazy. Like, really. It took me so long! That shame-laced story I had been telling myself had really hurt me, and I couldn't seem to see it any other way, not for many many years.

She didn't think twenty years was so very many.

Telling her about it was healing. Then going to the hospital on Saturday, and finding Mike peaceful, comfortable, and receptive, and sitting quietly next to his bed and telling him about it - my husband, who knows my vulnerabilities so well, yet has not heard much about them recently as he's been so sick - this was another great gift to me. There was the unexpected release; then there was the telling and the being heard, which enabled something new to begin growing in my heart where that hard false story had been.

I love clinical work with college students. I could give you a laundry list of reasons why, but for the very first time, it occurred to me that maybe I was originally drawn to do this work because I needed to open up that hurting place and let it heal. Huh. Who knew?

I needed help with that. I've gotten it from all sides: coworkers, clients, supervisors, my friends, my family. Seeing my children suffer their dad's illness. Talking with my mom and sister. Walking this road with Mike.

If I was able to be in therapy myself right now, I don't think I would have brought up any of these issues. How remote! My feelings about myself as a college student? Who cares when there are much bigger, slippery, scary-looking fish to fry?

Yet the gratitude I feel, and the wonder, and the peace, make me realize how important it is.

I'm not ashamed of myself. I'm not a fake smart person. I don't have a phony degree. I'm supposed to be here, imperfect and lined, yet whole.

What makes the vulnerability and serendipity and big love possible? How did talking about Shakespeare with Frances set something that had been rumbling quietly away for years into rapid above-surface motion? I am awed.

I am calling it grace. I do believe.

the lengths we will go to

Last week I was sitting next to one of my marvelous colleagues, waiting for a meeting to begin. I asked her if she was worried about developing a migraine - she was eating something I thought was one of her triggers - and she sheepishly confessed that if she did wind up a migraine, that would be okay.  It's the only time I feel like I can drop everything and really take care of myself, she explained. Her family knows to leave her alone, and she retreats to her dark peaceful bedroom, relaxing in the quiet until it subsides.

I thought of her on Sunday, sitting on the couch with Beatrice cradled in my lap: a long, hot, four year old baby snuggling her face into the crook of my arm. She had a fever. She threw up multiple times the night before. Too miserable to read a story or watch a video, she just wanted me. She would occasionally turn her face up towards me, gaze at me for a long time with her serious dark-fringed blue eyes, then sigh and snuggle back into position. You're still there. Good.

I was giving her spoonfuls of water, as one does, so as not to upset her delicate stomach all over again with a big guzzle (which is what she felt desperate for). She wanted to drink. She wanted to eat. I had to keep telling her, over and over, that we had to wait. Memories of the previous night (and my rather thorough clean up efforts, living as I do with someone whose counts are suppressed by chemotherapy) motivated me to stay firm.

Eventually Tylenol kicked in and she began to feel better. She watched a Tinker Bell movie. I sat with her for some of it. I already knew more about Tink and her fairy pals than I care to confess. After it ended, she turned to me with those big soulful eyes and said, Mama. I like having a sick day.

I thought back over the misery of the past 18 hours.

You do?

Yes! You get to watch movies and snuggle.

That's true.

Mama, you like it too. I know that you love to take care of me. 

She held my gaze when she said that, and behind her smile that lingered a little too long I detcted gritted teeth. She said it with finality; the tone and expression said don't you DARE disagree Mama. Just smile along and nod. YOU LOVE IT. That is all.

It's possible that Stockholm Syndrome had set in, but really, I did love it. I first had to make peace with missing an African dance class I had helped to organize. That hurt. But there on the couch, sinking into the cushions, peeling Bea's sweaty arms off my belly every now and then, I felt a deep contentment. There's no way around it when your kid is really sick. Someone has to stop everything, downshift from the whirring multitasking pace, and focus on fetching water and being a piece of human furniture.

The next day she was feeling a lot better but given the recent fever I dutifully kept her home from school. We painted our nails. Hit another Tinker Bell flick. Worked on a bit of art. Tried eating toast and bananas. It was awesome.

She was so sad and mad to go to bed that night. She writhed in her sheets and kicked her feet over her head while I sang her songs. The writing was on the wall.

This is the worst time of day, she pouted. I hate going to sleep all by myself, and when I wake up, I know I will be all better and have to go to school with Didi and Gabriel.

The migraine was over. Back to regular life.

Prior to getting sick, and since, Beatrice has been ragged around the edges. Super clingy, quick to cry. She protests nearly every time I leave her side, which is often. It sometimes seems she would prefer I quit my job, stop making dinner and doing laundry, send her siblings to boarding school, hire a personal assistant to take over Mike's medical management, and dedicate myself 24/7 to being a snuggly and cheerful Beatrice Needs-Meeter.

Is it possible for a four year old to unconsciously will a fever into full bloom so she can enjoy some much-needed intensive caregiving? She's too little to know about self-care; for her, mama-care is where it's at. (I'm with her on that one).

Self-care is a weird phrase. It sounds so clinical, when what it means in practice is things like watching a favorite movie and painting your toes with your daughter. Like, good life things. I'm put off by the idea that we have to pencil in "self-care" the way we pencil in dentist cleanings, soccer games, and work meetings. Being urged to prioritize and plan for self-care is a sign that something about regular life is out of whack. The whole system is busted when we feel there isn't time to see a friend or take a long shower or go for a walk.

A quiet yet rebellious part of me objects. I do not like these terms! I do not want to schedule exercise on the family calendar in order to get any of it! I want time, space, and breathing room to be part of the deal; I don't want to have to get sick, or have one of my kids get sick, in order to enjoy these things.

Full disclosure: I use the phrase self-care all the time, at work and in the rest of my life. I use the concept freely. I encourage the students I counsel to take care of themselves with intention, to make sure they are sleeping and eating and going outside (not always easy for newly independent people). I tell my friends to be kind to themselves, to prioritize time to do the things they find restorative.

However.

I just hate the way mindfulness and self-care are thrown around in our popular culture, in magazine headlines and health newsletters. 5 minutes a day to a happier you! Meditate your way to success! Don't question the scramble, the pace, the consumption, the systemic injustices, the emphasis on achievement and status. Just utilize these handy tools - it only takes a few deep breaths a day! or a pedicure once a month! - and you can keep going full steam ahead. 

I think I mean I don't like self-care talk when it shines like a tool designed to keep us cogs in the capitalist machinery docile.

This fall the family schedule is daunting. There's soccer, piano, dance, choir, after school activities. There's three different pick-up plans for the three days I work. Mike has to go to New York every Wednesday for treatment and he usually isn't well enough to help with transport and child care on the other days. When my kids were younger I used to observe families balancing multiple afterschool activities and judge. Harshly. What a useless scramble. What about time outside? Weird and creative pursuits, a la magic potions concocted in the kitchen or a new style of paper boat to float in a puddle? What about boredom, dreaming, looking for a friend to play with?

But here we are. I feel confused about how it happened. Today we have two piano lessons, after school drama, and a dance class. Then it's parent night for Beatrice's class this evening. I don't like feeling as if I am careening from one thing to the next. But it seems to be what one does. My kids' peers operate this way. My friends operate this way. The slight difference is we are trying to make it work in the context of battling Mike's disease, so resources are stretched pretty thin. With so little time to breathe, I sometimes feel as if I am in a barrel headed for the falls. How do you work the brakes in this damn barrel, anyway?

I yearn for a life in which I feel sufficiently cared for just because. In which my barrel slides into a quiet eddy and I climb out and rest my feet in the cold rushing water at the river's edge and watch blue dragonflies dart and hover over wet dark fallen branches.

Sometimes I see everything through the cancer lens. Conflicts with the kids, separation anxiety, my ball-dropping habit, my many recent cooking fails. Like, if only Mike didn't have this damn disease, I'd have this family thing tied up, tight. The kids would be happier. The pain of life would be lessened. But I know that a lot of this stuff just is. Nevertheless, part of me wants to ensure my kids have a 'normal' life; I want to deny cancer the ability to take anything away from them. Not a single choir rehearsal, not a single ice cream cone. I really do want them to have it all; trying to make it so is an act of defiance.

I suspect if I were able to cultivate more acceptance and quiet my anxiety about protecting my kids from the limitations of having a vulnerable sick parent, I'd be able to look around sometimes and say no you can't do that. No we can't come. No, we need time to be at home together doing absolutely nothing at all. You kids might not master a musical instrument or a sport. You might not wind up with a stunning college resume. It's fine to not be the best. In fact, it's fine to be good enough.

And we are.

Now let's put our feet in that cool water, and look for minnows.

one-arm dance

The most fun I ever had during my few years at Fresh Air took place in the control room. It was the very beginning of the 21st century. My dear friend Ann Marie sat at the computer just in front of me. We had been assigned to work on Terry Gross's interview with David Rakoff, who had recently published a book. I'd long been a fan of his personal essays.

Before long, we were laughing so hard we were crying. I remember typing away, looking at the computer screen blurred by tears. He was funny, biting, vulnerable. David Rakoff was verbal in a way that can't be adequately described by the word verbal. His mind whirred away, and thoughts flowed out in elegant descriptive sentences delivered at a faster-than-average clip. He spoke the way he wrote. And he wrote in a way that was so personal and funny that the reader - at least this reader - felt a kind of intimate fondness for him usually reserved for close friends.

After that, even though he didn't know it, I sort of considered David Rakoff to be a friend. Maybe that's weird. But I truly cared about him. He gave me the gift of that hilarious hour spent with a friend (who actually knows that she's my friend) and with Terry, not to mention hours of delight while we edited the interview. We still quote it. The experience somehow cemented my bond to the show; all these years later I still feel connected to my colleagues from that time.

Yesterday I went on a short run and listened to a recent This American Life podcast in which they reran a tribute to David Rakoff. He died of cancer five years ago. I remember the grief I felt when I heard the news, and how soon after I sat alone on the bed in my purple bedroom in Annapolis after the children were asleep and watched a video of him reading at a live TAL show near the end of his life. In the course of his treatment his arm had been amputated, or maybe he had just lost the use of it. He talked about how he'd learned to do things like cook a pot of pasta with one arm.

Then he shared that he had, in abler times, taken dance classes. That he loved dance. And then suddenly, unexpectedly, the stream of words quieted. He walked to the other side of the stage, and with one t-shirt sleeve shoved inside his pants pocket and his pale head shorn of all hair, he danced. 

David Rakoff moved with exquisite grace. His body said much more than his words. He was dancer! I hadn't known. He was a dancer, and in his brokenness, he shared a dance.

This morning at church, our assistant priest opened the communion portion of the liturgy by saying something to the effect of: do good, and share all that you have, for such sacrifices are pleasing to God.

Words like these normally to me sound like: be kind, be generous, give to the poor, visit the sick, give of your great reserves to those who have less. Be charitable. Time and talent! Give. It's not the only place we hear such messages. We're supposed to help the needy. 

But what if you are the needy? When we are urged to be more charitable, a position of power is assumed. Other people have less power, and it is our duty to descend from our perch and give them a hand. Giving is a comfortably good thing to do. Give a meal, give money, give time to a charitable organization. I feel awful many times a week when I am reminded that I don't have the ability to give in the way I once did.

We are rarely encouraged to receive charity. We are rarely urged to accept welcome with grace. But the truth I have discovered is that accepting generosity is just as hard, if not harder, than being generous. We don't value weakness, poverty, illness, dependency. We don't want to be defined by these things and when someone goes out of their way to help you, you are recognized in your vulnerability. Exposed, revealed, raw.

It's been a grueling few weeks for Mike medically, and thus for our family generally. At this point in my career as caregiver/advocate the way that I know I'm really struggling - like, alarm bells are going off all over the place - is that I start to not want to ask for and receive help. I notice myself hiding away, taking on everything as stealthily as I can, crying alone, because I can't bear to reach out for the support I need. Basically, when I am that depleted and worried and emotionally stretched, being exposed in all my raw vulnerability is too damn painful.

It's hard to ask for help. It's hard to admit you need help! So when I feel bad, I'd rather not.

It's one of those unfortunate human paradoxes, I guess. When I am most in need of help, I am most disinclined to ask for it.

As you might have guessed, I'm emerging on the other side of one of those hard times. Mike has been home from the hospital for two days, dear Heather drove all the way here to help with the kids and the house so I could work on putting things back together again after a tough week. I've had the chance to exercise again. And listen to a podcast. And cook a meal.

Normal people stuff. Normal people who can give to the needy type stuff. Not crying-on-the-floor-of-CVS, wrecked and raw, freaking people out with public tears, really really broken kind of stuff. Nah, that was Friday. Now it's Sunday night, and I'm stable, I'm good. I'm so good I can get back to asking for help.

Help, help, help!

See, it's fine.

Remember how our priest invited us to communion by saying do good, share all that you have, for such sacrifices are pleasing to God? When I heard her today, I thought of David Rakoff's dance. Share all that you have. Don't not share your dance because you only have one arm. Share your lack, share your incomplete body, give it all away. It will be breathtaking.

Maybe both the pain of receiving and the effort of giving are forms of doing good. Giving and receiving charity; seeing and being seen. Maybe we are called to inhabit both sides of acts of love.

I don't know why telling you how hard this feels, how tired I am, how I worry my kids are angry at me, how I cry a lot, how I obsess over my own minor health problems, how I am late to everything, how I worry I am letting Mike down, how my heart breaks many times a day, how I laugh too loud, how I hug everyone tight including some who might not actually want me to hug them, how I embarrass my children, how I ate a big dish of ice cream last night only two weeks into my six week dairy-free experiment (to see if it will help one of my aforementioned minor health problems) seems akin to a one-arm dance. But it does.

I am sharing all that I have, incomplete and exposed and beautiful in its own way. It takes a certain modicum of strength to share my weakness that I might not always have. But with your help, and with God's help, I'll keep trying.